Meeting of the Parliament 20 June 2018
It is tough to watch and read about breast cancer patients and their ordeal. Who would not want to make policy changes when they learn about Jen Hardy, from Edinburgh, and her HER2-positive secondary breast cancer? She has been denied Perjeta and the 16 months of life that it could give. When someone who is exhausted from the effects of breast cancer considers moving home to get treatment, that shows how much it matters to her. Similarly, the 31-year-old daughter of Jacqueline McEnaney has cystic fibrosis and would benefit from Orkambi. This week, she attended the funeral of the last of her childhood friends with the condition. Orkambi could extend her life and improve her daily quality of life.
Only thanks to advances in medicine is this debate even possible. Previously, there would have been no hope, but now there is. However, with that hope comes a new set of challenges. There is an expectation on the NHS and the state to do everything possible to save our friends and relatives from pain and early death. We want new medicines and innovations to be used by the NHS to improve people’s lives and to encourage greater innovation by industry and researchers. However, that cannot be at any price or effectiveness, because that might have an effect on other treatment and services that are provided by the NHS, which might be equally—if not more—justified.
The SMC process is specifically designed to assess the flow of new medicines from pharmaceutical companies. Because drug discovery is not cheap, that decision involves a difficult set of judgments. It has been recognised that the process for orphan or ultra-orphan conditions requires adjustment, but progress since the Montgomery review has been slow. Even so, the ultra-orphan process has nothing to do with Perjeta. The PACS tier 2 process should give patients a better chance of accessing Perjeta on an individual basis, but why is there a need to use that process when the drug is routinely available in England?
There is a lack of clarity about what is happening with end-of-life drugs such as Perjeta. How can Perjeta be cost effective in England but not in Scotland? Leaving aside the cancer drugs fund, how was a special deal reached with Roche in England but not in Scotland? I hear what the health secretary says about the PPRS, but that does not explain why the Welsh Government has given the go-ahead. Similarly, in Northern Ireland, we are seeing a managed arrangement around the use of Perjeta.